Sticky Blood-Hughes Syndrome Support

Saw a specialist in NB Canada

Hi all. Last time I wrote, I was heading off to see a specialist (rheumatologist) that was suppose to be more knowledgeable about APS. Although, my glyco beta 2 has been positive 3 times and my ACL was just positive borderline, he said that he could not diagnose APS since I have never had a major episode, he didn't feel that the numbers on the tests were high enough to warrant a diagnosis of APS. Here in Canada, the normal for ACL is under 49, and I was 49.9. The glyco beta 2 test must be lower than 18 and mine are over 35. I still cannot work. I have all the symptoms and they are very disabling. I now walk with a cane due to balance issues, I can no longer drive because of the brain fog, and the headaches are constant. My brain waves now show epileptic activities. The specialist did not say that I didn't have APS, just that he wasn't comfortable diagnosing me with it. Not sure how much more energy I can put into getting concrete answers.

I hope all of you have wonderful holidays with your family and friends and may many blessings find you in the new year

2 Replies

Hi Danluc, I totally empathize with you and what you are going through. I live in Canada also and it was just today I was telling my PCP that the health system has failed me. I have been brushed off by one doctor after the other and presently I am diagnosed with MS but had 3 positive ACL tests. So I don't know if I have MS, APS or both. I even had to seek help in the US as it was taking too long for me to see a hematologist after the positive tests. Like you they refuse to give me any anticoagulant as I have not had a thrombotic incident.

The lab that did my tests here and in the US use the same units as the UK and so the normal for ACL is about 11 or 12 (not quite sure but in that range) and mine was 35. If he cannot diagnose you who is going to? That is so disheartening. You don't need a major episode to be diagnosed when you have positive tests for 2 of the antibodies. Apart from the UK, there does not seem to be many docs who want to adequately deal with this disease. It is on them to upgrade their studies when something new is discovered so they can treat their patients. My heart really goes out to you. I also use a cane due to weakness in my right leg and I just got fitted with an AFO for foot drop.

I worry sometimes but for the better part I have just resolved myself to whatever happens happens as I am not a doctor and I have sought help. You have done the same and I can understand the lack of energy to do anything else. Don't give up though. Take a break, gather some more strength and go at it again. That is what I am doing. If you can afford it maybe the UK is your best resort. I cannot afford it as I would surely go there if I could.

All the best and happy holidays to you too.


So sorry that you are going through this. Sadly almost all of us have a similar story. I just wanted to say we all care and wish we could help! It doesn't make ANY sense to me that you HAVE to have a documented clotting event (TWO in the US) and positive blood tests for a diagnosis and anticoagulation. I am currently trying to get an appointment with a specialist at John's Hopkins in Baltimore. Will let you know how it goes, as maybe it could be a resource for you. Take a break, and come back fighting! Best of Luck and Happy Holidays!


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